God doesn't give children with special
needs to strong people; He gives children with special needs to
ordinary, weak people and then gives them strength. Raising a child
with special needs doesn't TAKE a special family, it MAKES a special
family.

Monday, March 9, 2009

Matthew's new things

***UPDATE****I thought I would add links for the nubby ball and the bathtub that I wrote about below(click on the words below to go to coresponding website)

First is his tub. He has outgrown the baby tub I had for the other kids and by this time, my other kids were in the tub with the big ones. Matthew's head control is VERY lacking and he is unable to hold it up at all. In talking with Matthew's therapist, she recommended a bath chair. She brought one out that was very nice and I was ready to order it and probably at some point will still need it, but I was looking for something a little simpler for now. When I was reading through the fetal hydrocephalus website, Michelle had recommended a tub that worked for Owen. I emailed her to see if Owen was still able to use it (he's 2 1/2) and Michelle said he still fit nicely in it. She even sent me a link on where to buy it the cheapest. Matthew still had some baby gift money left, so I bought it. We've used it three times already and it's NICE. It's a bit big, but it will work for him for a LONG time. Here's a sweet picture of him, and yes, he is asleep. He almost always falls asleep during his bath.

The tub is called Eurobath by Primo and I believe they are only sold online

The next thing we've been using is called a light box. Matthew's vision is very poor, but can see better with lots of light. The vision specialist through the school brought this light box out with various toys that come with it. He really looks at box a lot when I turn it on. The toy in front of it is called a rainstick. I found this on-line also but I've also seen them in various special need toy catalogs. Matthew is very in tune to sound, so this toy helps him to know where to look and the outside of the toy is sort-of prism shaped which makes the light look really cool when you look at it. We also use a flashlight to light this toy up to help him see it. The next thing his therapists will do is to make an insert for his highchair so he can sit in it better and then maybe we can put the light box on his tray and he will see his toys better.

In this picture we're killing two birds with one stone. Matthew is doing tummy time and we're using the light box to encourage him to lift his head (or at least prop it on the boppy!) Sorry the picture is not good quality, the light box is really bright and my camera was having a hard time getting a good picture

And here is a close-up on the rainstick

The last toy we recently purchased (VERY cheap on Eb@y) was a nubby ball. I can't remember quite what words I used to search for this ball(maybe 'special needs bumpy ball'??), but it was less than 4 dollars-including shipping. And the company that sells these employs visually impaired individuals in Florida, so I felt especially good about my purchase. It has lots of 'nubs' on it so that Matthew gets lots of sensory stimulation touching it. Matthew does lots of sensory issues, so this helps with his hands a lot. I also roll it along his arms and legs, too. This ball, along with lots of infant massage, has helped 'desensitize' him, so to speak. Everytime we go to the hospital, he gets lots of 'negative touch' from all the procedures, blood draws, etc. that they do, so when we come home, I always have to work with him extra hard for a couple weeks to trust touch again. This last visit set him back especially and right now he still crieseverytime I pick him up :( That is one reason I am SOO diligent about doing as few procedures as needed when he is in the hospital. We pay for it when we go home.

Finally, one other item that has been helping are Matthew's hand splints. His therapist ordered them for him and they help keep his thumbs out and not in a clenched position. They are called neoprene splints and they are made byBenik. He wears them mainly when he sleeps and then about 1/2 of the day. They are oh so cute on him!

Well, he's just having all sorts of new adventures! I think it is so adorable that he falls asleep during bath time :) and that light box is a really cool invention. Is Mason better yet? Hope everyone is doing well!

Thank you for posting these!! I, too, am interested in the hand splints. We do hand stretches throughout the day but Audrey still keeps her hands in fists - they aren't as tights as they used to be though so the stretching is working.I wish Audrey was as comfy in bath water as Matthew!! How cute is it that he falls alseep during his baths!!Looking for the nubby ball as well - I think Audrey would love that!!!

WOW! an awesome post! I love the toys & the light box is a great idea! I sooooo wish Little Man would sleep in a tub. He screams until he is wrapped & dry.I LOVE the Benik Gloves. Little Man wears them & they have made a BIG differance in his grip.

i just read you blog...could help but notice how cute your son is. i have a hydrocaphlis baby as well....i like the toy for the vision problems cuz my son has them to.....we dont know about how much vision he will have yet...he has had 2 surgerys and will have one next week for his eyes....

About Me

We have four beautiful children: Micah, Megan,Mason, and Matthew Owen who was born with congenital hydrocephalus, epilespy, septo-optic dysplasia and other anomalies. In spite of all these diagnosis, Matthew is thriving and is a delight and a blessed part of our family. Come, if you wish, and join our journey. This blog contains events of our real life, full of up and downs, good days and bad.